Robert Mayer left his job as a superintendent of education in the Sudbury area not because he wanted to. It was because amyotrophic lateral sclerosis (ALS) made it a necessity.
Robert was diagnosed with ALS in January 2018 and now he struggles daily with the progressive nature of this terminal disease. It’s why he and Team Robert will be raising money and participating in the ALS Society of Canada’s Walk to End ALS in Sudbury on Saturday, June 18.
Robert, who has participated in the Walk to End ALS since 2018, will cut the ribbon at the start of the event. His team had an initial fundraising goal of $5,000, but have now raised more than $6,000. His new fundraising target is $8,000.
“The most challenging aspect of ALS is recognizing that each day your world is getting smaller,” says Robert, who is married with two children ages 17 and 15. “Things that you could once do are no longer possible. I know what lies ahead and I am grateful that I am still able to participate in the Walk helping to make a difference by raising awareness and money for ALS research.”
The Walk to End ALS, which returns to in-person events as part of June’s ALS Awareness Month, is expected to raise $1.9 million in Ontario. Funds raised will support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families in Ontario living with the disease.
“There is no cure for ALS making community-driven events like the Walk to End ALS so important,” says Emily Moffatt, community lead, ALS Canada. “They provide an empowering and action-oriented opportunity for people living with or affected by ALS to gather to build awareness and raise much-needed funds.
“The event helps bring people together in their desire to put an end to ALS, celebrates hope for a future without ALS, and honors those we have loved and lost.”
More than 3,000 Canadians live with ALS. The disease can move with startling swiftness: four out of five people die within two to five years of their diagnosis.
Once diagnosed, the cost of the disease to the average family is $150,000 to $250,000 – an amount that can include the expense of specialized equipment to help people maintain their mobility as the disease progresses, as well as lost income while family members take leave from their employment to care for their loved one.
Those with ALS face a progressive and gradual decline in the ability to talk, walk, eat, swallow, and eventually breathe.
The Walk to End ALS is the largest volunteer-led fundraiser for ALS Canada, uniting Canadians in their desire to put an end to ALS. Proceeds from the Walk to End ALS in Sudbury enable ALS Canada to provide services and support for people living with ALS in Ontario, and to ensure a strong pipeline of funding for the best of Canadian ALS research.
Last year, more than $2.1 million was raised nationally.
The Walk to End ALS in Sudbury, which has a fundraising goal of $40,000, will include a pre-game warm-up by GoodLife Fitness. Details for the Walk are:
Date: Saturday, June 18
Location: Delki Dozzi Track, 3 Mary St.
Time: Registration: 9 am, walk start at 10
Distance: 1 to 5 km
Who: Participants showing their support for people and families living with ALS, and for research for a future without ALS.
Available for an interview are:
Further information on the Walk to End ALS or to donate to the cause can be found at: walktoendals.ca/ontario or by emailing Sudbury@walktoendals.ca
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It gradually paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will.
Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. More than 3,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.